I am starting to have muscle jerking not only at rest but when I am using the mouse the scroll, my hand will suddenly jerk forward involuntarily!! Yikes!
I do not know if this is a Lyme-related symptom, a herx, or neither (possible neuro issue).
I do know that it is scary and I don't know what to think of it. I have only been on Ketek 400mg a day for the past 2 1/2 weeks so I doubt it is a herx?
Perhaps I am going downhill fast.
I also have developed a tingling/numbness in the toe next to my pinky toe on my left foot. This is now with me 24/7. If I touch it, it vibrates/tingles internally.
Is all of this a herx or something not even related to Lyme (MS? ALS? Parkinson's? Myathesnia Gravis?)?
Posted by lymeout (Member # 8045) on :
VACHICK, My daughter had occasional jerking, usually head/neck since the beginning of her illness, but when she went on ketek, it became much more frequent and pronounced. Sometimes she would have up to 8 jerks in a row. I told her doc that it looked almost like a seizure - she agreed. On top of that she developed fluttery sensations in chest, back and limbs that nearly drove her crazy. She stopped ketek, but symptoms lingered long after. The doc put her on lyrica, which helped the jerking immensely. It rarely happens anymore. The flutters continue but are lessening. She has been off ketek (now on IV Doxy) for more than a month. The fact that she had the jerking prior to ketek leads me to believe that it is herxing; the flutters, tingling probably are too. I think the ketek just reached the bb's like nothing else has; but she just had to back off until we could see for sure that there is no permanent effect. Still don't know for sure. I guess time will tell. There are some other threads on ketek you may want to check out to see if you can get a better picture. Good Luck!!!
Posted by minimonkey (Member # 8693) on :
Based on my recent copious reading, all of these are neuro lyme symptoms. I have them all! The jerking is much worse now since I was dumb enough to let a neurologist suggest to put me on Effexor -- I'm scared to even try weaning off it due to the horrible side effects of doing so --- I'm in bad enough shape as it is!
Sad part is, I knew about the w/d before I went on the drug -- I decided to try it anyways, since some people were finding pain relief from it -- I didn't know about Lyme then, and thought I was suffering from incurable "fibromyalgia." Live and learn, I guess....
Posted by Ms. Myoclonus (Member # 6750) on :
Hello, Do a search on lymenet for myoclonus. There are many discussions on involuntary muscle jerking caused by Lyme. I would jerk violently for three or four hours at a time.
This symptom has greatly improved due to Lyme treatment and the anticonvulsant Zonegran. A great site that discusses myoclonus is www.wemove.org
Take care, Ms. Myo
Posted by paulscha (Member # 6334) on :
My clonus started with isolated muscle jerks and progressed to full-on convulsions. Best to get it treated now.
Valium works and in my opinion is safer than most anticonvulsants. Gabitril can help but dosing is very tricky, because if you take too much or increase the dose too fast, it can cause seizures instead of preventing them.
Nearly all antidepressants will make this problem worse, because nearly all of them lower the seizure threshold.
It's prudent to wonder about other causes but most movement disorders are diagnosed clinically, just like Lyme. The first priority, in my opinion, should be finding a medication you can tolerate well that makes these jerks STOP.
I would start with valium. Unlike many other benzodiazepene drugs, it acts both centrally and locally, so you have a pretty good shot at getting relief.
If you have an addictive personality there could be issues, but I don't find it addictive personally at all. My biggest challenge is remembering to take my meds, not gobbling them down for fun.
Remember, there is plenty of documentation that Lyme can present in a clinically identical fashion to virtually every major neurological disorder known to man.
Are your liver enzymes being monitored? Ketek can be a problem for the liver and if it isn't being done already I would ask for monthly or bi-weekly blood chemistry panels to make sure you're not having a problem there. A functional liver helps get rid of Lyme toxins, and an antibiotic that causes liver function impairment may cause those toxins to accumulate, aggravating your symptoms.
Personally, given the corrupt state of the FDA, I try to stay the hell away from new drugs. That applies to anticonvulsants, too.
Good luck! I know from years of experience how wretched this kind of thing is to endure.
Posted by vachick (Member # 8353) on :
I have some Valium from my neurologist years ago and take it when I go to get an MRI. He actually prescribed it for my muscle twitching beofre it became jerking.
anyone try Clonopin? I think that is for myoclonus...
I have taken Ketek for about three weeks. Do you think that is long enough to cause permanent liver damage? I have been taking milk thistle for the past year and especially during my time on Ketek. But now I worry that I have damaged my liver irreperably.
I just had my liver blood test done last week, but don't know the results yet. If I don't hear by tomorrow, I will call.
So, would you take any other abx other than Ketek? Doxy?
Posted by Aniek (Member # 5374) on :
Minimonkey - My myoclonus started when I was on Effexor. It got so bad after two weeks, that I started going off of it. Gradually decreasing Effexor is ok. You just don't want to stop cold turkey. Mine never went fully away, but is much less. It has also declined with lyme treatment.
Posted by Aniek (Member # 5374) on :
Myoclonus can be scary. Mine also got worse on Ketek for a period. And then it got much better. It came back slightly recently, as did many other symptoms.
I've noticed it's worse when I have aspartame/nutrasweet. This might be because I only drink diet soda when I've overstressed and overtired. Or a combination.
It was also work when I did cardio exercise. So I stopped cardio, which Dr. B. recommends anyway when treating Lyme. I do yoga only for exercise. It gets the heart beat up, but not as quickly.
I believe the mycolonus may be caused by babesia not the lyme. It seemed to accompany other babesia symptoms, for me that was leg muscle pain and foot pain.
I never treated the myoclonus medically. I was already on a muscle relaxer, flexeril, that I need to control muscle pain.
Posted by gwenb (Member # 7217) on :
I had horrible jerking for about two years. When I was trying to fall asleep at night my jerking would wake me, just before I was about to drop off, about 5 - 10 times a night. It was horrible. Since taking magnesium (anywhere from 750 - 1500mg - I judge it by bowel tolerance) my jerking has almost disappeared - probably a 95% reduction.